On Being A Patient Revisited

I often think of my dear friend Brian Gawlik who had been managing his illness for over a decade when we interviewed him in 2008 for our Speak Sooner newsletter (before I began writing a blog for the website). I continue to be inspired by his wise words.

At the time he was readying himself for a bone marrow transplant. As an educator he was acutely aware of wanting to truthfully describe his experience so that others on a similar journey could benefit from what he was learning. Sadly, Brian passed away the following year. I believe his experience will continue to speak to patients at every stage of illness. It is with gratitude to him that I am sharing his words with you once again.

Brian said, “Ten years ago my notion of being a good patient was to listen, not communicate, and leave. I needed to know [then] I had a right to ask…I learned quickly it was all about communication. Patients [must] feel that they have permission to say ‘I don’t understand…you need to say it in simple terms’. I discovered that there is no benefit in hiding anything. It all feels so personal and invasive but it is in our best interest to share it all. Every patient has to understand that this is a partnership [between doctor and patient]—each has to understand what is expected of the other.

“A good patient is not being the patient you think the doctor wants you to be. A good patient is being who you are… We are who we are because we learn. Who I was as a patient ten years ago and who I am as a patient now is because of all the experiences I’ve had with CCM and with [other] patients… CCM helps patients understand what they need. I recorded my visits, which takes away the worry of me having to remember everything the doctor says.

“ It’s a process—a dialogue with others—with oneself… ‘Patient, know thyself.’ Sounds so trite. You have to really do some soul searching—it’s …work; it’s not something you do on the way to the doctor’s. It’s that long walk kind of stuff where you contemplate your life—what you need, what makes you happy—what doesn’t.  [When] you know those thing’s, it makes the medical encounter so much easier. When the communication process is efficient it leaves time for conversation—time to talk about anything else—to learn about each other and bring in the human element.

“Communication goes beyond the doctor—it’s with family, friends, employees, employers. Now that I am getting closer [to the transplant] I am spending more time thinking about what they need and they’re feeling much more included and that they have roles to play. And those roles are important.

He concluded by saying, “Patient, know thyself. Family, know thyself.  Doctor, know thyself.”

Brian understood that through self-knowledge and asking hard questions we can be prepared to communicate more clearly and honestly, which helps patients, families and healthcare providers to be on the same page. He continues to teach us all.